help please

[admiral123]

I have been sick for five years and it took me years to find the right doctors (now they are terrific) I have been going for yearly MRIs which have shown increased spots each time but not really significant. My neurologist said at the last vist, "I am not going to diagnose you with MS yet but we'll keep an eye on things." He has been treating me for burning pains, loss of balance, confusion, muscle weakness and my newest gift dizziness and flashing lights. I am not due back to see him for several months but I believe my symptoms have gotten worse.  My Rheumetologist is treating me for arthritis and fibromyalgia and thinks my problems are reheumetological, my blood tests come back good but my arthrititis responded to prednisone(an evil drug) which led her to believe that it was a inflammatory type arthritis. Years ago I was diagnosed with Sarcoidosis which went into remission. Is anyone else in  similar boat I feel like someone may be missing something and what is up with the white lights dancing around my head when I am dizzy. (My eyes were healthy at my last eye exam except for a spot on my retina which is healed and from an unknown cause.) I no longer have a thyroid but my levels are perfect. Any similar situations?

[admiral123]

Thanks for your reply, LB/VEP were done and ok, Lyme was negative along with a whole host of other tests. All is good with the opthamologist other than the spot on the retina which has remained unchanged. I am taking thyroid replacement. A spinal tap was done which was negative  for MS but showed sarcoid at "a # 8" but the lab advised the doctor they have no measurable scale for sarcoid in spinal fluid.(I did not understand that one. The MRI has shown an increase in spots (I started with 3 and now have 8 but they are small. (Over a four year period) I am on lyrica (300 a day), anti-inflammatories, detrol, nexium and meclizine and skelaxin.  

[PlateletGal]

I'm not surprised to hear that you were diagnosed with sarcoidosis in the past. All of your symptoms definitely could be from fibromyalgia.

Some links you might be interested in.

Fibro symptoms:

http://www.fmnetnews.com/basics-symptoms.php
http://www.fibromyalgia-symptoms.org/fibromyalgia_treatment.html

MR-imaging and voxel-based morphometry study in fibro patients:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0712A&L=co-cure&P=R410

[essdipity]

Hello, and welcome to the MS forum.

Are the only neuro tests you've had MRIs? What about LP or VEP? Have Lyme and other diseases been ruled out? What are the findings on neuro examination? In what ways are your symptoms being treated?

I don't get what increasing but not really significant spots (in MRI) are. It sounds as if your doctors are just letting you drift, not my idea of great medical care. Have you seen an ophthalmologist about your eye problem? Also, sardoidosis can cause neuro symptoms. Finally, I assume you are taking thryroid replacement, no?

I hope you get answers soon.

ess